What Everyone with a Retinal Disease Should Know about Vitamin A

If you think of your retinas as the engines that power your vision, then vitamin A is their fuel. Without vitamin A in our diets, we wouldn’t see.

In developed countries, typical diets provide enough of the nutrient for good vision and general health. However, according to the World Health Organization, Vitamin A deficiency is a public health problem in more than half of all countries, especially in Africa and Southeast Asia, impacting young children and pregnant women in low-income areas the most. As many as 500,000 vitamin A-deficient children become blind every year.

In the retina, vitamin A is an essential ingredient in the complex biochemical process that makes vision possible. Known as the visual cycle, the process involves the conversion of light into electrical signals, which are sent to the brain, where they’re formed into images.

It begins when proteins called opsins are made light-sensitive by metabolized vitamin A in the retina’s photoreceptors. When light hits the back of the eye and is absorbed by the opsins, they trigger the formation of electrical signals.

Vitamin A Palmitate as a Potential Therapy for Retinitis PigmentosaEliot Berson, M.D., at Massachusetts Eye and Ear Infirmary (MEEI), Harvard Medical School, conducted Foundation-funded clinical studies of vitamin A palmitate as a therapy for retinitis pigmentosa (RP). He found that it slowed vision loss, and its effect was enhanced when combined with docosahexaenoic acid (DHA), a healthy fat abundant in coldwater fish, such as tuna and salmon, and the antioxidant lutein. Dr. Berson used a vegetarian DHA supplement in his studies.

There are important considerations to be made before embarking on vitamin A palmitate therapy. First, do not take the high level of vitamin A palmitate (15,000 IUs) recommended by Dr. Berson without doctor supervision. It can be toxic to the liver, and a test should be performed on a regular basis to ensure that it isn’t.

Second, Dr. Berson evaluated the nutrient for only RP and some forms of Usher syndrome (RP with hearing loss). Vitamin A palmitate should not be taken for a retinal disease that was not part of his study.

Before supplementing with vitamin A palmitate, I recommend that you read the Foundation’s Vitamin A Packet to learn about the diseases included in the study, as well as many other important considerations and caveats.

Determining Who Might Benefit Most from Vitamin A Palmitate Therapy
One of the big challenges in identifying therapies for RP and Usher syndrome is they’re actually a family of diseases. Collectively, mutations in more than 60 genes can cause the conditions. So, in essence, more than 60 diseases fall under the RP-Usher umbrella.

Because each gene plays a different role in the retina, when they’re defective, they cause vision loss in different ways. While some emerging treatments are cross-cutting and may work independent of the genetic defects, many only target specific genetic defects and disease pathways.

While Dr. Berson’s study group as a whole had their vision loss slowed by the therapeutic regimen, only some patients benefitted, and it wasn’t clear if genetic profiles were a factor. Most of the patients in Dr. Berson’s studies did not have their disease-causing gene mutation indentified when they enrolled.

To determine if certain genetic profiles benefitted more than others, the Foundation is funding Eric Pierce, M.D., Ph.D., at MEEI, to genetically test some of the participants to see if there is any correlation between their mutations and changes in vision.

He’s also studying reduced doses of vitamin A palmitate in children to determine if they can achieve benefits similar to those in adults.

Vitamin A is Harmful for People with Inherited Macular Diseases
Do not take any vitamin A supplement if you have Stargardt disease, Best disease, cone-rod dystrophy or any other form of an inherited macular degeneration. These conditions result from the accumulation of toxic waste products from the processing of vitamin A. In animal studies, vitamin A supplementation led to more waste and accelerated vision loss.

31 Responses to 'What Everyone with a Retinal Disease Should Know about Vitamin A'

There are three main types of RP: recessive, dominant and X-linked. If you are not sure, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:

You may also want to try to identify the disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what research is being done. You also may be able to qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:

Whether you identify your disease gene or not, you should consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. For more information on “My Retina Tracker” please see the following web link:https://www.myretinatracker.org/

It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.

We hope you find this information helpful. Please let us know if there is anything else we can help you with.

I am so happy to run across this article! I have been taking 15,000 units of vitamin A palmitate form fro 21 years. I was diagnosed with RP at the age of 23 and the vitamin A was highly suggested by my opthamologist. A second opinion was suggested at the time and a specialist urged me not to take it. At the direction of my opthamologist, I decided to take it and have been grateful for my vision since. I’ve noticed a loss of vision over the years but believe the vitamin A has helped slow it down. I will be adding the DHA and lutein to my vitamin A in hopes that it will help as well. I’m assuming the Neuromins (DHA) only comes in one dosage of mg as I didn’t see listed what to buy as I did for the lutein at 12 mgs. daily. Please advise me if there is a certain mg I need to look for with the DHA. Thank you so much for this aritcle. Anytime there is a study done that is positive, it serves as a ray of hope for those like myself!

We have developed a new combination product containing Vitamin A 15,000 IU, DHA 200 mg and Lutein 12 mg (the exact ingredients and dosages used my Dr. Berson in his studies). All 3 ingredients are available in just one softgel. Please visit our amazon product page for more information: http://www.amazon.com/gp/product/B00PHY4LE0

I have been taking A for years, bit less than the 15000. I take 8000 daily, since my Mom died from liver problems. Interestingly, Dr. BUONACOLTA gave Mom high A doses in the 1950s. But I also have macula degeneration from myopia. Can A harm that?

There is evidence from several animal studies that vitamin A supplementation may accelerate age-related macular degeneration and Stargardt disease. However, I am not aware of any published studies that provide evidence that vitamin A can accelerate myopic macular degeneration.

Sorry about the previous unfinished message. I wanted to know what the exact dosage of the regimen is. I am 38, is it too late to start? Also there are conflicting information regarding the correct recommended dosage. I have the vitamine A palpitate 15 u, I also have the DHA omega 3 200mg and Lutein 12 mg. How much should I be taking each.
Thanks.

Pls i realy need help my cousin’s kids are going blind they where not born blind but as they grow blindess surfaced as am talking to you now the first two kids have gone blind and the third one is going blind i think this hereditery i need advice/help .

There are three main types of RP: recessive, dominant and X-linked. If your relatives are not sure, they should ask their ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf
Your relatives may also want to try to identify their disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what research is being done. They also may be able to qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf
Whether they identify their disease gene or not, they should consider participating in FFB’s “My Retina Tracker”, a free registry that can help them find out about clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:https://www.myretinatracker.org/
It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.

Have them Checked for Stargarths or Cone/Rod Dystrophy. This is a gentic form of juvinile macular degeneration. It impacts there central vison. There are vitamins that might slow it down. Be sure they do not have Vitamin A in them. Hope this helps.
Pam

Are foods high in Vitamin A/beta carotene an issue for those with Stargardts? My daughter has Stargardts – should we limit foods like carrots and sweet potatoes, or does the beta carotene metabolize differently?

This is a very tough question to answer. There is a published scientific study that shows that vitamin A supplementation to both normal rats as well as the Stargardt rat model results in an increase in lipofuscin. “Invest Ophthalmol Vis Sci. 2008 Sep;49(9):3821-9. doi: 10.1167/iovs.07-1470. Epub 2008 May 30. Accelerated accumulation of lipofuscin pigments in the RPE of a mouse model for ABCA4-mediated retinal dystrophies following Vitamin A supplementation. Radu RA1, Yuan Q, Hu J, Peng JH, Lloyd M, Nusinowitz S, Bok D, Travis GH.” Although there is no data in humans that restricting vitamin A or beta carotene could slow disease progression, Alkeus has developed a form of vitamin A that upon light interaction, does not form toxic vitamin A metabolites and A2E. Alkeus’ lead compound, ALK-001, is an oral compound with a well-understood mechanism of action. ALK-001 was specifically designed to treat Stargardt disease by preventing the formation of these toxic vitamin A dimers in the eye. Alkeus is currently recruiting patients for a Phase 2 human clinical trial. Here is the link to the clinical trials.gov recruitment page: https://www.clinicaltrials.gov/ct2/show/NCT02402660

Beta carotene is a precursor that your body converts to Vitamin A. You can turn orange if you intake too much but it is different and physiologically harmless. Many articles online, including Wikipedia, say this.

Do NOT take vitamin A if you have stargardts disease. beta carotene is needed for good health, in general, but is also bad for stargardts. the foods highest in beta carotene are: yams, carrots, broccoli, spinach, kale and the most colorful fruits. just limit the ones highest. beta carotene can not (& should not) be completely avoided. i am NOT a dr, just do a lot of research.

My mother-in-law has stargardt disease and her Dr told her to take vitamin A, I’ll definitely be passing on this information to her specialist, get this sorted out, we don’t want it doing more harm than good.

Animal studies in the Stargardt mouse model show that supplementation with vitamin A result in accelerated disease progression. Based on this information it may not be a good idea to take vitamin A if you have Stargardt disease.

I am 50 year old female and just dignosed with RP. I don’t even know how much vitamin A and Lutein I should take in daily. My doctor says it’s better to take in food instead of taking suppliments. But I don’t think I would ever know if I take enough or not so taking pills are better. However, I don’t even know hou much I should take them a day since my doctor doesn’t really recommend it. In order to take right dose of suppliments, do I have to check my vitamin A level by blood test? I need some advise how and what I need to do first. I really don’t know what to do. Thanks!

Tina, you should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:

Whether the disease gene is identified or not, one should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:https://www.myretinatracker.org/

It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.

hi Ben, Thank you for a great article on Vitamin A.
I have a Stargardt decease. I use Retin-a cream for acne and wonder if I do hard to my eye. Could you please refer me where I can find more info on this.
thank you

You should also consider enrolling in “My Retina Tracker”, a free registry that helps link people with retinal disease to appropriate clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/

Of general interest, there is a “Stargardt – Macular Degeneration” Facebook page where people can communicate with other people affected by Stargardt disease. Here is the link: https://www.facebook.com/groups/Stargardts/

Finally, below is a list of pharmaceutical companies that are developing therapies for Stargardt Disease:

Acucela,( http://www.acucela.com/) is a Seattle-based biotechnology company that is developing several drugs for retinal diseases such as AMD, dry eye, diabetic retinopathy, retinopathy of prematurity and Stargardt disease. Acucela’s visual cycle modulators (VCM) reduce the activity of the rod visual system — in essence, “slowing it down” and reducing the metabolic load on the retina. Reducing the speed of the visual cycle has been shown to protect the retina from light damage and reduce the accumulation of retinal-related toxic by-products, including A2E, which is implicated in both Stargardt disease and dry AMD. The Company’s lead investigational compound (Emixustat™) completed Phase 3 trials for dry AMD in June 2016. Unfortunately, the drug failed to slow lesion growth in over 500 patients with geographic atrophy, a form of dry AMD. Because of a strong demonstration of efficacy in the Stargardt mouse model, Acucela is considering initiating a study to explore potential benefits of Emixustat in patients with Stargardt disease.

Ocata Therapeutics (https://www.ocata.com/), a Santa Monica-based biotechnology company, has developed an RPE cell line that is derived from embryonic stem cells (ESC). Studies have shown that the subretinal transplantation of ESC-RPE cells in a rat RP model resulted in 100% visual function rescue. Functional rescue was also achieved in the Stargardt mouse model with near-normal functional measurements recorded at more than 70 days. The RPE cell transplantation studies are now in Phase 2 human clinicals. Here is the link to the Clinical Trials.Gov recruitment web page: http://www.clinicaltrials.gov/ct2/show/NCT01469832?term=advanced+cell+technology&rank=2
*Note: It is not known how long the transplanted RPE cells will last in a human patient with Stargardt disease. Unless gene or pharmaceutical-based augmentation treatment is coupled to the RPE transplant, toxic A2E will continue to be produced and eventually kill the RPE cells.

Alkeus, (http://alkeus.com/) Alkeus has developed a form of vitamin A that upon light interaction, does not form toxic vitamin A metabolites and A2E. Alkeus’ lead compound, ALK-001, is an oral compound with a well-understood mechanism of action. ALK-001 was specifically designed to treat Stargardt disease by preventing the formation of these toxic vitamin A dimers in the eye. Alkeus is currently recruiting patients for a Phase 2 human clinical trial. Here is the link to the clinical trials.gov recruitment page: https://www.clinicaltrials.gov/ct2/show/NCT02402660

Vision Medicine (Previously Visum) The Foundation Fighting Blindness is partnering with Vision Medicine to develop a small molecule therapy Stargardt disease. Vision Medicine’s novel approach proposes to develop drugs that will temporarily control levels of A2E in the eye and preserve the natural vision cycle, leading to a therapeutic treatment. Vision Medicine has discovered a unique chemical approach to sequester rather than eliminate A2E. Through this process, 25 diverse FDA approved drugs demonstrating both mechanistic and in vivo efficacy have been identified. Vision Medicine has identified a lead compound, VM 200, which is an enantiomer of an FDA approved drug that demonstrates complete retinal protection in preclinical studies. Vision Medicine plans to conduct Phase I and Phase II clinical trials in the near future.

My 29 yr old son was just diagnosed with Retinitis Pigmentosa. He has had multiple tests, including an ERG and the specialist suggested he start taking OMEGA 3. There are so many! After a little bit of reading it seems the OMEGA 3 DHA is what we need to “zero in on”. The specialist was clear about the Vitamin A regiment, so we will be working with his primary care AND the specialist on this. What OMEGA 3 and amount should we be looking for?

Researchers funded by FFB have reported that a regimen consisting of vitamin A palmitate supplementation, consumption of oily fish high in the omega-3 fatty acid DHA, and lutein supplementation may slow loss of vision by 20-25 percent in people with certain forms of retinitis pigmentosa and Usher syndrome. For more information, please see the following web link to download a PDF document:http://www.blindness.org/sites/default/files/pages/pdfs/Vitamin-A-Packet.pdf

Hello, I have been suffering from stargardts disease since 2 years. Pls let me know how to cure this disease completely or whether I will Lois my vision completely.and also kindly inform the foods/vitamins should take to cure this disease and the foods should be avoided.

My sister is 80 years old and got an infection in Acapulco in her right eye,unable to see, only see a form and a very clittle color…..
What is the best treatment?
3 specialists for eyes give her drops and did not do anything ….

Dear Rachelle, I am sorry to hear about your sister’s infection. My suggestion would be to seek medical help from a board-certified ophthalmologist in the U.S. The safety and efficacy of treatments outside the purview of the U.S. Food and Drug Agency can not be guaranteed. There are lots of snake oil peddlers out there.

Hai sir am a cone dystrophy patient.. 27 years age myvision vision from past6 years S same 6/36 and 6/60 …doctor suggest me to have vitamin A but in ur article I found that vitaminA for cone dystrophy ll create toxic…. Am confused.. Plzl clarify me rewarding this sir… And suggest some of methods to maintain my sight ( please reply me to shamithachandru@ gmail. Com

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